Last week, I spent a few days discussing important health and patient issues with a group of inspiring patient leaders representing a wide variety of disease states and communities. Although none of us had the same disease, we discovered that we had similarities and overlap in our experiences and philosophies.
As we each contributed to the conversation, several of us would preface our responses with our own personal experiences or those we’ve observed in our communities. I found myself frequently saying things such as:
- “As an MS blogger…”
- “Within the RA community, I see…”
- “As a person living with chronic illness, I….”
On the trip home, I realize that not once did I say, “As a musician living with MS or RA, my experience is…”
Even after being active in the online community for over 5 years, I still keep my life as a musician separate mentally and emotionally from my life as a patient battling chronic illness. But, to be honest, how could those two lives truly be isolated from each other. Living with disease affects all aspects of your life, whether you want it to or not.
In November, HealthCentral is exploring Arts and Health. As a musician, I am well aware of various uses of arts in health such as in the fields of music therapy or art therapy. But I was not familiar with the number of resources available in this growing field.
The Arts Council of England published “Arts in health: a review of the medical literature” (pdf) by Dr. Rosalia Lelchuk Staricoff in 2004. The National Endowment for the Arts published “Arts in Healthcare: Best Practices” (pdf) in 2008. In 2009, the Society for the Arts in Healthcare established Arts & Health: An International Journal for Research, Policy and Practice.
Rather than speaking academically about arts and health, I thought I would talk about how health has impacted my life as a musician. How have these two worlds collided?
You may remember in my story that before RA was diagnosed, my doctors thought that I had carpal tunnel syndrome. One reason they believed that this was because I had lost full use of my hands and was in a great deal of pain. In fact, I began to lose use of my hands while serving as a church pianist. Let me tell you how embarrassing it is to hit those “clunker notes” while being paid to perform accurately. Unfortunately, I wasn’t invited back to perform at that particular church.
My embarrassment on that particular Sunday morning in 2006 came only one year after I had lost the use of the 4th and 5th fingers on my left hand as well as the strength to lift my french horn due to MS. Somehow I managed to find a way to muddle through my performance obligations while I was undergoing intensive occupational therapy to regain strength and control on the left side of my body.
Since those early months in 2005 and 2006, I have regained much of the use of my hands. However I still can’t do some of the things I used to be able to do musically. In college, I spent no less than 6 hours each day working at the piano in addition to time spent practicing horn and I had hands stronger than any member of my family.
Now, I feel strong when I can sit at the piano and play for an hour without feeling like my arms and hands are ready to fall off. There are days where I have trouble stretching my hands wide enough to span an octave on the keyboard and others where I feel strong enough to play through Beethoven sonatas or Chopin polonaises.
During the hours that I am teaching, I have learned to avoid pounding away repetitions with my students just in order to push them forward. I have learned to use my words more effectively, although there is no substitute for a good example performed. If my joints and tissues feel warm, I avoid using my hands too much so that I don’t cause undue stress and pain. But fortunately, that happens less and less as my RA has been under control for the past 3 years.
In adapting to life as a musician who is affected by MS and RA, I have had to adapt to physical circumstances which may change daily. I have had to learn to be patient with myself and not to bemoan the fact that I can no longer perform the pieces I once could. I have accepted that I don’t have the strength I once did and that I need to concentrate on using my body in an efficient and ergonomic manner to protect what physical resources I do have on a given day. No efforts are wasted.
These are mental changes more than they are physical ones. But it is interesting that I continue to mentally separate my musical life from my patient blogger/advocate life. Perhaps I have been reluctant to integrate all aspects of my life back into one whole being. Just as I will forever be a musician inside and out, I will always live with chronic illness. Arts and health will forever be intimately intwined in this one life I have to live.